Our lives on the spectrum


April has begun and it’s World Autism Awareness week/month. In fact it is celebrated specifically on 2nd April, but also all week and even throughout the month across the world.

About a year ago, our son was diagnosed with Autism Spectrum Disorder (ASD).

There is a lot of misunderstanding, misconception and lack of empathy about autism. Autism is a lifelong disability that affects communication, social interactionand behaviour. Yes, it is a disability. You can’t see it like other physical disabilities, but it’s there. There is no shame in having a child with a disability, it doesn’t make my son any less. Autism is not a superpower and it is not just doing things differently, but it isn’t a disease, nor a curse nor the end of the world. My son has many strengths, but the challenges he has faced and his daily struggles are significant and it is heartbreaking. People fear the unknown, what they don’t understand, so perhaps if I talk openly about our experience raising an autistic child, I might be lucky enough to spread more understanding and acceptance to anyone who wants to read with an open mind and an open heart to learn.

Autism changed ourselves as parents in many ways. For us, it changed what we thought being a parent meant. You see, when you are expecting your first baby, you have an idea of what parenthood would be like. We never meant to know it all or to be perfect parents because there is no such thing, but you dream of their first word, their eyes looking into yours expecting praise and smiles. You picture this little person wanting to play with you, who wants your comfort when they feel sad and need your guidance. That didn’t happen in the first years of Antony’s life. His speech has blossomed in the last couple of years, though, but it’s not at the same level of a child his age. We were overjoyed when he started making animal sounds and putting two or three words together, even if that was much later than the average kid. I do understand the saying “our eyes are the windows of our souls” very well now because when he looks into our eyes, we feel closer to his pure little soul.

Those who know him can tell you he is very loving, clever, funny, full of energy…his cuddles are a bit of an extreme sport! He likes everything in big sizes: kisses, cuddles and mouthfuls of food! He can read pretty much what you put in front of him, but he doesn’t always understand what he has read. His communication has improved greatly in both languages. His fluency is better in English and that is to be expected as he is immersed in an English speaking environment all day at school. For someone who struggles with communication I think he is doing brilliantly being bilingual and I am so proud of him, because he makes a great effort to make himself understood. Numbers are still his thing: he knows his times tables, he is constantly doing math operations. I think it is safe to say numbers are his happy place.

However, autism has made us face some very challenging moments, too. Antony has no sense of danger and that means he needs constant supervision both indoors and outdoors. Hence the helmet he wears…safety first! He gets frustrated when something doesn’t go the way he wants, when his routine has an unexpected change and that struggle with communication and understanding is what makes him throw himself to the floor, or bang his head on the floor or with his hand. It breaks me. As a parent, you don’t want to see your child getting hurt. When he started with this episodes, my first instinct was to stop him from doing harm to himself, but I have learnt that it is best to let him do that, because otherwise the meltdown is not a pretty sight.
At the moment, he is going through a defiant stage against authority. He wants to be in control of what he does, and if he can’t (I mean, let’s face it: he is a child, children can’t have full control of their lives) it causes him great anxiety and frustration. He doesn’t understand cause and effect so it is really difficult to explain why things are like this or that or why you do this or don’t do that. It must be hard for him to try to understand the world sometimes, and it is frustrating when nothing we do helps.

No two children with ASD are the same, the strengths and struggles our son has are not the same as for other autistic children. This I have told you is only part of our experience They are all unique, just like the rest of us neurotypical individuals are. Our son enjoys life just like other children, he will face challenges that not all kids will have to, but all he needs is love, understanding and patience from us to help him along the way. It is hard! I ain’t gonna lie! But I can’t imagine our lives without him. We have developed levels of patience I never knew possible, and there is room for lots more! We love his sense of humour, his dancing and his lovely personality.

I just pray to God for more buckets of patience…a never ending supply if possible! Oh, and energy because we need it to keep up with him! We love our little boy more than anything. I hope one day he’ll be able to read this and realise how proud and lucky we have always been to have him, and that we love him unconditionally, in good and bad times.

D-day

This is my lovely boy, the apple of my eye, my first baby. He filled me with great joy when he was born…he made me a mum, and that has been a big title…a huge one! Not just because it is my role as a mum to teach him a bunch of life lessons, but because it has been me who has had to learn even more to be able to bring him up the way he deserves. There have been many kinds of tears along the way: tears of joy, excitement, frustration, fear, love, lack of understanding, pride…tears of not knowing how to react, what to do, how to help…tears of feeling helpless.

It was a very important day yesterday for our family because we have finally been given his ASD (Autism Spectrum Disorder) diagnosis. Autism is not an illness nor bad parenting, it is not caused by vaccines and dedinitely not something I or we have or haven’t done. Autism is a condition which means Antony does and feels things differently to other children. He struggles with communication and expressing what he is feeling, for example if he has a tummy ache or a headache or if he’s just feeling a bit sad. Imagine the impotence of seeing your child complaining because he is in pain but you can’t do anything because, poor little thing, he can’t explain what he’s feeling or where it hurts or the frustration of seeing your child crying and agitated because he can’t explain this or that and doesn’t fully understand reasoning…it’s heartbreaking!

It’s been a few years of difficult times trying to make your little voice come to light, seeing little words, phrases and sentences flourish little by little. His speech is still very tender, and yet he is bilingual…he understands his mami and daddy, it’s amazing how he knows which language to speak according to who he is talking to. It amazes me when I hear him reading and count to 1000 and beyond non-stop. I love his brilliant memory and the happiness he radiates day to day…and those massive cuddles he gives!

I love him more than life itself! I love how clever he is, his joy and his energy…oh how I wish I had at least half that energy! I love him with his obssessions and repetitive behaviours. I pray to God for wisdom, patience and strength (because there are days where tiredness takes its toll!) so that his dad and I can bring him up and guide him throughout his life. I love you, my dear son…sweet boy of my heart! I celebrate who you are and I hope the world can get to see the purity of your soul.

Being bilingual and other fears.

When Antony started nursery earlier this year, a part of me was gearing up for a possible talk from his teacher, simply because I knew my child, I knew the whirlwind he is and I have always known he wasn’t your everyday child. I have always thought he was different…special!

When we were told he might be on the spectrum, I crumbled, though. A bunch of uncertainties and insecurities grew on me. I hated to think ‘I knew something was up’ and wondering whether I should have done something earlier. I started blaming myself, trying to think what I may or may not have done that caused him to be what he was. Had our parenting been poor? Had I done something during my pregnancy that caused him harm? Had I been a bad mum? Why was this happening? Why was this happening to our first born? I wanted to pinpoint the cause of our dilemma so badly.

Since that talk we had at school, our journey for a diagnosis began. I have lost count of the many questions we’ve been asked regarding our son’s behaviour. When we have to explain and go through his array of peculiarities, I can easily point the time and day he did something astonishing or when he had a bad meltdown. I feel my brain is turning into a catalogue where you can find things that trigger meltdowns, methods for coping with X or Y situations, things he likes and dislikes and of course…everything about his ‘Antonysm’, that’s how I call his little world.

Personally, dealing with his speech and communication issues has been one of the toughest experiences I have dealt with in my life. Because of my background in linguistics and keen interest in language acquisition in children, it had always been very important to me to play an active role in the development of my offspring’s speech and communication. I hail from the warm and humid tropics of Central America and so, as a native Spanish speaker, it was also crucial to pass on my mother tongue. Therefore, we decided to bring any children we would have bilingual.

Slowly but surely, we saw little words coming from his mouth in one language then the other language’s would appear soon after. But then, one day, we felt his speech was not developing as fast as other children his age, and there was the ‘he is bilingual, maybe his speech is delayed because of that’ kinda thought. I kept having that nagging feeling that there was more to it than his bilingualism.

I even fell into dark places of not trusting the way I have been bringing him up, where I wondered if being bilingual caused him any delays and I hate myself for falling into that trap, because, deep inside, I don’t think being bilingual is causing him any detriment.
Research on bilingualism in autistic children is scarce; experts haven’t found whether being bilingual is harmful for children with autism. I have been given advice from well meaning people in the past, telling me that perhaps it may be better to speak to Antony only in English, but my gut tells me that I ought to stick to what I have been doing since he was in utero – talk to him in my native language- simply because that is what comes naturally to me.

Antony amazes us. Every time he learns a new word in one language, its counterpart comes soon after and he gets it!
For example, if he wants an apple and he asks me in English, he immediately corrects himself, without being prompted, and goes for ‘manzana’ and it happens the other way round, too. He knows which language to use for the people in his life.

When I was expecting Antony, I looked forward to his first words and little sentences, I looked forward to his first curious questions and those ‘But why?’ moments. And then, as months went by, a delay in his communication skills became more and more apparent, and I became more concerned, wondering what I was doing wrong, why my little boy wasn’t saying yes or no, why it wasn’t until he was reaching his second birthday that he started calling us ‘Mami’ and ‘Daddy’.
I am no speech therapist, but there are moments I wish I was…the moments where I see how frustrated he gets when he can’t let us know what he needs/wants, when his efforts to speak end up in an agitated babbling that turns into meltdown and/or tearful screams. I often struggle to hold back the tears…and fail.

Even though I have got over that initial “shock” of the news, I can’t help but feel worried about the future:
• I wonder how Antony will cope with education and learning…I know he has great potential because I know he is very bright.

•I wonder if he will be able to pursue a career. I keep thinking whether he will get to go to university and study something he loves.

• I wonder whether he’ll be able to find a job that fulfills him and gives him a sense of achievement. I want him to realise he can be useful to society and feel proud of himself for doing so.

• I wonder if he will make friends along the way, if he’ll find people who cherish him and enjoy his company.

•I wonder whether he’ll fall in love, if he’ll find someone who will love him for who he is, with the good and the bad times. I hope he will find true love.

We may go through tough days with him, but we also have some pretty amazing days with him where he surprises us. We can’t stop and complain about our situation. What we have to do is support him along the way, be there for him and give him our unconditional love and patience. My son is a pure soul and I want everyone to know it!